I am not at all steady today, sweet boy. The tears won’t stop. My eyes are swollen. The world does not spin as it should. The fog descended again and everything seems slow motion. It has been twenty-two days.
Today I am simply hoping to hope.
Years ago I wrote a blog about Kintsugi, the Japanese art of repairing broken pottery with gold. The pieces are put back together with gold leaving familiarity but a new creation reinforced and more valuable than before the breaking.
I wrote it after your dad died. I tried so hard this morning while watching the morning sun come to hope perhaps I would be put back together once again . This time, sweet boy, my soul is not broken. It is pulverized.
I began looking for some sort of hopeful imagery about pulverized material being created into something new.
Glass Blowing
It begins with molten glass. The process requires purified sand (the structure), ash (lowers the melting temperature), limestone (stabilizes and strengthens), and recycled glass (makes the mixture melt faster and conserves energy). The mixture is heated to about 3100 degrees Fahrenheit for melting, chemical reactions, and impurities rise out. The molten glass is kept hot for the refining process. The heat forces trapped bubbles to escape, the mixture becomes uniform, and impurities separate.
The artist will then blow air through a special instrument to form the shape. The new creation is shaped by the artist’s hands, gravity, and breath of life.
Perhaps glass blowing will be another writing for another day. A day when I can see the forming shape that has been created by God’s hand and the breath of His Spirit.
Today is not that day. Today I have not been able to stop crying. Today your baby brother held me on the couch as I sobbed and told me it was normal to be sad, that I should cry it out so it doesn’t come out in a bad way. I don’t know when he got so wise. The coin flipped and instead of me telling him it was going to be all right and kissing away the sadness, he did that for me.
I told him about a sermon I watched today about Nathaneal, his name sake. In the Book of John, Philip tells Nathaneal about Jesus.
Can anything good come out of Nazareth? John 1:46
Before Nathaneal knew Jesus he couldn’t imagine what good may come. Immediately upon being found by Him he said “Rabbi, you are the son of God; you are the King of Israel.” (John 1:49)
It didn’t take long for Nathaneal to realize what good could come from unexpected places. I told Nathan for us, it may take a little longer not because we don’t believe but because our grief is so deep. But we do believe. And it is coming.
Your sweet brother got me the last coke in the house with a bunch of ice. He even made it fancy to try to make me smile. And it worked.
It is a beautiful day today, sweet boy. The kind of day you would sit on the swing and with furious determination scroll through your Ipad.
I managed to catch up on watering plants and even repotted a couple. Still, most of the day was spent on the couch unpacking the medical trauma from two weeks ago and, of course and always, missing you.
We got to the hospital on February 17th around 11:00 am. As we waited for them to call us back you were feeling well enough to be ticked off. They drew some bloodwork, got you a room, and started IV medication and fluids. After a few hours you were moved to a different part of the emergency room where the stable patients went until a bed opened. You were supposed to go to the general medicine floor. Even the medical professionals could not see and lab work hid how sick you really were.
Around 11:30 pm it all began happening so fast that I didn’t know what was happening even as it was happening.
He is in A-fib. We are moving him to the part of the ED where the ICU trained staff is.
As soon as she finished her sentence a team descended and whisked you out of the room. We have been in the hospitals enough to know rushing teams is not good.
You were taken into the resuscitation room with an unsettling brisk pace. At least twenty people went in the room. It was the same room they took Grandpa into by ambulance 2 years before… My heart sank.
What is happening?
Let me get you a chair.
What is happening with my son?
When they do not answer your question you know you do not want to hear the answer.
I peaked in your room
Your blood pressure was 60/40. You were pale. You were dying. I begged you to stay.
Please come sit down.
Afib….Low blood pressure. Cardioversion. Shock. Could die…
Where is Mom?
I see her standing in the hallway lost. She looked so small and so scared, not the feisty woman I know.
Can you get my mom a chair?
We are conferring. He may need cardioversion to shock his heart. In rare cases it can cause cardiac arrest.
I fall to my knees. Head bowed. Hands clasped.
Please God, one more time, let me keep my son.
My mom calls her best friend on the phone. It is midnight. Her friend comes immediately.
I call Steve. He is crashing. Please come.
A nurse kneels next to us.
I don’t know much because he just got here but I will answer what I can.
Finally someone is speaking to us.
I look in the room again. His blood pressure is 50/30
We are pushing a lot of fluid.
A social worker appears. Do you need a chaplain?
The only time they call a chaplain is when someone is dying. I decline.
The fluids seemed to be helping. Cardioversion postponed. They take you to the ICU.
Over the next few days I would see only small glimpses of you. You were on a lot of medication. I began missing you already.
The next big trauma would begin on February 21st and would be your last.
No more shocks to the heart, sweet boy. No more infections or failing valves. No more cascading dominoes. Not for you, anyway. Mommy is trying so hard every day to keep one domino up. I just need one to stay stable. It often teeters but I will not relent. You taught me well. I will make you proud.
Steve and I went to church today with the “baby.” When I brought Nathan home from the hospital thirteen years ago I taught you the sign for “baby”. It didn’t occur to me then that someday you would still be calling the six-foot one teen age brother “baby”. You loved it when he came with us on our outings, especially Target. He loved playing with you and giving you hugs. He hurts deeply now that you are gone.
I have been reading about “care giver crash” lately. It isn’t a medical diagnosis but is a psychological and physical collapse that occurs when prolonged caregiving suddenly stops. I guess my body was in chronic survival mode. It helped me to stay alert, sleep lightly, and wake quickly so I could care for you. The adrenaline, hyper-alertness, cortisol, and purpose I had for twenty-four years are cruelly and abruptly no more. Apparently it is my nervous system’s way of finally saying “It’s safe to stop now” and years of exhaustion surface all at once. I detest it.
Then the collapse… exhaustion, bodily heaviness, trouble concentrating, waves of grief, headaches, muscle aches, sleep disruption, feelings of disorientation. Unbeknownst to me, my nervous system was carrying a huge load for a very long time. It didn’t feel like it because it was all in the care of you and it was my honor.
Add grief over losing you and gravity is much more than 9.8 meters per second squared. Even the weight of my body in the world is different. Steps are heavier. Sitting up feels like exercise. Everything is a challenge.
When your big brother Emerson was little I remember watching an anime with him where the hero went to another planet to train. The gravity was much heavier so when he went back to his original planet he was stronger, faster and could jump higher. The extra gravity worked to his advantage. Perhaps that will be my case. I hold on to hope still yet.
But I went to church today. Gravity made it hard to stand. The music started. I lifted my chin and sang the words. As if enveloped in thick mud it took all my strength but I did it, sweet boy. I raised my hands in worship. Worship isn’t an emotion. It is not a feeling. It is a necessity and I felt better for it knowing God is worthy and realizing you are on the other side of eternity singing praise. For a moment, once again but altogether different, together we sang.
We were going to go out to eat with Grandma and Aunt Dolly later but I just couldn’t. We never did that before because the few times I did go to church I always had to go straight home to catheterize you. Today wasn’t the day to start that tradition. It just didn’t feel right yet. It may never feel right but, I hope, it will eventually feel less wrong.
On the way home Aunt Dolly started coughing. I still said out loud “Aunt Dolly coughing. Better do something!” even though you weren’t in the car to laugh. Do you remember how I started that game because you would get scared sometimes when you started coughing? Whenever you were scared we would make a game of it and suddenly the fear was replaced with laughter. The unintended consequence was every time you heard someone cough you would laugh.
I came home and collapsed to the couch. The doorbell rang and it was a friend who has traveled this road. She gave me a book and told me it helped her on her journey. There is something profoundly beautiful when someone who has walked through hell comes back, holds out her hand, and shows you the way.
find me there.
where sunsets glow
but it never gets dark.
where pain doesn’t exist
and comfort is always felt.
where everything you’ve ever loved
finds its way back to you in the end.
the place you went to when
your heart fell asleep.
my time will come
to see you again
and you can
find me
there.
sara rian
I am so lost without you, my sweet boy. It is an agonizing pain worse than anything imaginable. I find solace that you don’t feel this pain and you are where it is never dark and all you know is comfort. And someday, my child, you can find me there.
I ventured out for the first time in almost two weeks since my precious son passed away. We drove to a Walmart 30 minutes from our home, one he did not go to on our daily outings. I thought it might be easier. I thought wrong. Walmart is Walmart.
We walked in. Deep breath. Two more steps. Exhale. I can do this. I can grocery shop.
I glanced to my left and saw the bakery section. We used to pick out muffins and cakes to mix with his pudding. He loved lemon, red velvet, and chocolate. My heart sees him lying in bed. He increasingly and aggressively signs pudding as his patience waiting for it wore thin. The boy could yell at me in sign language. How he loved food.
Deep breath. Two more steps. Exhale.
The tears fill my eyes.
Steve, my husband, wraps his arms around me. “I am here,” he whispers.
The tears are almost uncontrollable now.
Grocery shopping felt like a violation, a betrayal, a foreign country. It has been years since I went without pushing him in his wheelchair. Almost a quarter of a century talking to him constantly and asking his opinion about choices. Decades of playing “Woah Wesley” when he was ready to go but I still needed to shop. He would from angry screaming to laughing without taking a breath. Only he could turn an ordinary trip to Walmart into a joy filled, love tossing extravaganza.
A woman came up to us not too long ago in a Walmart.
“Can I give him something?” she asked.
She must have seen the confusion on my face because she continued.
“I have been watching you and your son. I have never seen someone so full of love and so loved. I just want him to have something. I have this gift card. Will you buy him something?” she asked.
We hugged. That was the magic of Wesley. His presence, his joy, his love could leave two people hugging in Walmart, grateful to have crossed paths and being forever changed by it.
Wesley picked out a “Bluey” hooded sweatshirt with the gift card. It sits untouched now in a drawer I cannot open. Not yet.
The tears now are uncontrollable.
“We can go back to the car,” Steve tells me as I cry on his shoulder.
“I have to do this. I have to learn,” I tell him even though I wanted nothing more than to run to the car, cry, and never go to Walmart again.
The pain, I knew, would be there today, tomorrow, next month. Time would not make unentangling myself any easier had it been postponed.
The grief inside me was irrepressible. I quickly walked to the bathroom, closed the door, and collapsed sobbing.
It wasn’t the first time I cried in a bathroom over Wes…
When Wesley was three weeks old Gary, my (now deceased) first husband, and I along with Wesley and his older brother, Emerson, traveled to Omaha, Nebraska to see Dr. Bruce Buehler. He was board certified in pediatrics, pediatric genetics and pediatric endocrinology. If anyone could tell us what Wesley’s diagnosis was, we hoped, it was Dr. Buehler.
The nurse showed us to a very large room with a small table for the children to play, some books, and an exam table in the corner. I sat at the little table next to Emerson, then two and a half, as he watched Shrek on his portable DVD player. How I wished I could be as he was, oblivious to the gravity of the situation.
I could hear cowboy boots coming from down the hall. The sounds grew louder as he turned the corner, entered the room, and with a smile stuck out his hand to greet us.
“Dr. Buehler,” Gary said extending his hand.
“Call me Bruce. No one calls me Dr. Buehler except my wife and that is only when she wants me to take out the trash,” he said with a deep belly laugh.
He motioned to the table and we sat down as he opened Wesley’s thick chart. By the time we found our way to Omaha the list of abnormalities discovered within Wesley had grown. New doctors had been introduced and before he was even three weeks old Wesley already had a pediatric urologist, neurologist, cardiologist, and gastroenterologist. He had a social worker, a speech therapist, and an occupational therapist. I had to purchase an expandable accordion file to keep track of all his medical needs. The fuller the file became the emptier my heart felt realizing how much my tiny baby had already been through and was yet to face.
A colleague of Dr. Buehler’s joined us and they asked me to place Wesley on the exam table. As a mechanic inspects a car, they examined every inch of his little body.
“He has a high arch and cleft palate. Did you know that?” the other physician asked.
I shook my head somberly no. Another anomaly.
They excused themselves to confer. Shrek played. His father and I could not speak. We knew when they came back in through the door, our lives would forever be altered.
After roughly twenty minutes they returned with two textbooks in their hands. Dr. Buehler flipped open the gigantic, blue book. With delicacy he looked at each of us and said,
“We believe your son has Rubinstein-Taybi Syndrome.”
Syndrome.
The room began spinning. Words became incomprehensible even though we walked in that office suspecting he had a syndrome. Gary was a maternal fetal medicine specialist. They had a “rule of thumb” when it came to anomalies. One was probably nothing. Two might be something. Three was almost always a syndrome. Wes had more than three, but when it was confirmed by a triple board-certified physician my entire world collapsed. As if hope, no matter how small, was the only reason my world continued to spin in the only direction I had ever known.
Then he said it. Syndrome. An obscure, uncommon Syndrome.
The clinical definition is “a group of signs and symptoms that tend to occur together and characterize a particular condition.” The emotional definition in my heart was “unknown everything” and it was scary. It was world shattering.
I could not have known then that the words he spoke would actually be my greatest blessing. It would bring me immense heart ache but also extraordinary joy. It would shape me into a better mother, wife, daughter, friend and human being. Later I would pinpoint that one sentence as the moment in time I began to become who I was meant to be. As it was happening, however, the only thing I could feel was utterly and completely crushed.
I excused myself to the restroom just across the hall. Closing and locking the door behind me I collapsed to the ground sobbing. How could my life, I wondered, have changed so dramatically and drastically in the amount of time it takes to hear a single sentence? I stayed curled up on the cold, bathroom floor for a while weeping for all I lost. My dreams and my family’s future, I thought, were gone. I could not imagine I would dream new dreams and be given a future far more glorious than one I could have ever created for myself. But hope, you see, had not yet been born.
How I wish I could speak to that scared, heart broken mother there on the floor with all the wisdom I have found over the last twenty something years. I would say…
Hope is coming. Hold on. This child will be your greatest teacher without ever speaking a word. In his weakness you will find your strength. You will be his voice and fight for him with all you have. You will reach a new level of exhaustion. You will want to give up. But then you will persevere. You will become a better mother, daughter, and friend because he was born exactly as he is. This isn’t the worst day of your life. This is the day you become who you were meant to be. Grieve because you have lost a significant dream. But then get up. You’ve got work to do.
After a few minutes I gathered myself, wiped away the mascara that was running down my face, and returned to the exam room.
“Will he be mentally retarded?” I asked with a whisper. (That was the acceptable term back then).
“I don’t like to put labels on kids. It can become a self-fulfilling prophecy. But yes, he will be,” Dr. Buehler said gently.
“Does he have a normal life expectancy?” I asked. I knew at that moment I could handle anything required of me. The one thing I could not handle was losing him. Whatever challenge or syndrome my child had did not matter. I just wanted to keep him.
“It will be shortened. By how much we are not sure, honestly,” he said with compassion.
As I sat in the bathroom stall in Walmart 24 years later sobbing, I realized I have to learn everything all over again. I have to learn to drive our wheelchair van with no wheelchair and no sweet Wesley. I have to learn to grocery shop without my constant companion. I have to learn to drink an entire Starbucks coffee and not save half for him. I have to learn to not receive fifty of the best hugs each day. I have to learn who I am because who I was until February 21st was entirely wrapped up in caring for him. I would have joyfully done it as long as God allowed.
And the cold, hard, cruel, beautiful, merciful truth is that I did.
Twenty-four years from now what wisdom will I have that I wish I could speak to the scared, heart broken mother sobbing in a Walmart bathroom? I think it will be something like this…
Hope is coming. Hold on. This child was your greatest teacher without ever speaking a word and taught you what you need to survive his death. In your weakness He will give you strength. You will use the voice Wesley gave you and you will identify yourself once again and help others. God will give purpose to this pain and you will use it for His Glory. Right now, you are in a new level of pain unimaginable. Gravity feels more powerful than ever because the weight of your grief is physical, emotional, mental, and spiritual. Some days you can’t lift your chin but you must lift your arms in praise. You will want to give up. But then you will persevere. You will become a better mother, daughter, wife, and friend because Wesley was here. He was yours and you were his. This moment is when you begin to allow God to work this, even this, for good. For you love Him and you are called according to His Purpose. Grieve because you have lost significantly and it hurts to the very core of who you are. But then get up. You’ve got work to do.
When I got home from Walmart I cried some more. I then opened my computer and looked back on my writing from 2018 and found some of what I have edited and shared here now. These words were written 8 years ago to not only share my journey with others but as a roadmap to remind me now.
When an harmful agitator enters an oyster, it’s natural defense mechanism is to protect itself. If the oyster can’t remove the foreign object, it covers it. It secretes a fluid to coat the harm. Layer upon layer of the coating is deposited until a pearl is formed. It can take months or years but the oyster doesn’t relent. It takes something that didn’t belong and was harmful and creates beauty.
And once again, there it is, hope is born.
This isn’t a harmful agitator. This is the death of my beloved son. I know it will take God and time and often, it feels as if they move too slow. But they do move. Layer upon layer what could destroy will become beautiful. Right now it is nothing but destruction and nothing could ever match the cost of losing my child. But hope and solace reemerge remembering how hopeless it seemed all those years ago. Hope presents herself knowing what beautiful pearls came from all I didn’t know and all I feared.
Unlike the oyster, my natural defense mechanism is not to create something lustrous and valuable from adversity. It is not natural nor my truth. My truth is it takes incredible effort. It takes conscious decisions. I must choose to see the good even when it feels nothing but bad. I must choose to hold on to hope. On some days I choose to hope for hope. I must choose my focus and change it accordingly. I must choose to not allow bitterness and anger come close. I must choose to battle when they come. And they do. I must choose patience to endure. I must choose to hold to the promises of dreams unrealized. I must choose gratitude. I must choose resilience and perseverance. I must choose to be unconquerable. I must choose faith. I must choose the only way I, personally, know how to obtain all those things. I must choose God.
Absence is all I hear… Your laughter no longer reverberates through the house. For now, it only whispers in my heart and I long with all my being to hear more, louder, explosive you. The chaos is gone.
Yet you remain
The beautiful fractals of excitement, impatience, joy, and love are flat and cold. Normal is abnormal for us. But love does not vanish. It changes shape- Becomes memory. Becomes breath Becomes the quiet strength that lets me stand here now. What was real cannot be undone. It cannot be broken The smile. The soul-deep laugh The hugs so intense your body shook. Those are stitched into me now just as you were stitched in my womb.
I pack away the medical supplies… The gauze… The catheters… The syringes and extension tubing… The thermometer and pulse ox can go in a drawer. There are no more emergency supplies No more doctor appointments No more labs to track No more fear over every sniffle and every cough
I detest the letting go. I would have gladly done it for the rest of my days. I spent every waking moment in the caring of you. It was my honor and privilege. My purpose and calling. I took pride in the way I cared for you not knowing, all this time My sweet boy, it was you who was caring for me. All I did for you could never match what you’ve done for me. People would often say God knew what He was doing when He gave you to me. God knew what He was doing when He gave me to you.
For you were the pillar. You were the strong one. You were the wise teacher. You were the hero. You were the unrelented soul with an infinite reserve of unconditional love. You were kindness and compassion. You were grace and you were mercy. You were the fierce voice in me that advocated for you and made me better.
You were my whole world and being your mom is, and always will be, my highest honor.
Thank you all for coming to celebrate the extraordinary life of Wesley Thomas Helmbrecht. He always loved a party.
I look around this room and see so many people who meant the world to our boy. You had such significance in his life. The only thing that mattered to him was love. Not money, not power, not status. Just love. And you graciously poured it into him. Words do not express my gratitude for all the laughter, lessons, songs, dances, and love you gave him. We all gave him the best life possible and he returned the favor
Wesley was born on October 26, 2001. We had no idea Wesley would have special needs despite multiple ultrasounds… Despite a father who was a physician specializing in diagnosing fetal anomalies and potential syndromes and despite ultrasounds by 4 other physicians`. God and Wesley held their secret until the moment he was born.
And from that moment he faced challenges. He was a fighter. He was the toughest kid I knew.
In the early days the doctors couldn’t tell me how long I would have him. “Shortened life expectancy” was all they really knew. Every day was a bonus. Every hug could have been the last. Every laugh might be silenced. Any moment could turn catastrophic and it often did. Yet it taught us to cherish things otherwise seen as miniscule. We had no small victories. Every accomplishment was magnificent and we celebrated it as such. It is a blessing and a curse to live each day as if it might be the last.
Wesley didn’t crawl until he was two and a half years old. But just around 14 months he figured out he could roll. He would get around the entire house by rolling, pivoting, and rolling even more. Nothing stopped our boy.
Every since he was little and throughout his life Wes would look to the sky and wave his arms. It would begin with a smile until his entire being bubbled with excitement. I used to ask him if he was talking to the angels again. I wouldn’t be surprised if he was. He had a direct connection. And now, for the rest of my life I will look to the sky, wave my arms, and talk to my sweet angel.
When Wes was eight years old we were walking through the mall and he approached a woman sitting on a bench. Before I knew what he was doing he threw his arms around her and hugged her. A complete stranger. I can still envision her face with tear filled eyes as she said, “you have no idea how much I needed that hug.”
But Wes did. We walked away and I asked Wes if God told him to do that even though I already knew the answer. I have countless of those stories. He was an angel among us.
Wesley attended Albemarle County Public Schools until finishing at Brownsville in 5th grade. He had special friends like Sydney Sherman who invited him to every single birthday party. The teachers wouldn’t put them together in the same class for fear of distraction. I will forever be grateful to that little red headed girl who was nice to our son.
He loved riding the school bus. As luck would have it, he had the same bus driver, Gary Miller, from kindergarten through graduating VIA all but two years. It wasn’t just a bus ride for Wes. It was a party and each and every day Gary delivered our child safely home to us.
Wesley went to the Virginia Institute of Autism in 2011 and graduated in 2023. He didn’t have instructors. He had best friends. He had people who genuinely loved him. And he had classmates who, I know, greeted him on the other side.
For the last 3 years he was home with us full time. From the moment I woke up until the moment I went to bed he was constantly by my side. I intensely cared for him including medications, catheterizations, dressing changes, and g-tube care. Mixed in all that was frequent pauses for hugs. We took care of each other in those moments. Our days were filled with one another.
He demanded his daily outings. Rain, sleet, snow or shine we went out every morning. For a boy who was non verbal he was bossy. He let us know what he wanted and when he wanted it. And if I ever said no his next sign was always, “Grandma”. If mom said no he was pretty sure grandma would say yes. Because she always did.
He spread so much love and joy in every Walmart, Bucees and mall within a 3 hour radius. People were instantly infected with his love just walking past him. He created ripples and changed lives in ways only God and now Wesley know.
Wesley loved music. It was his first word using American Sign Language It was at the very core of who he was – a way of expression that didn’t require words but everyone could understand. We took him to countless wineries, Fridays after Five, and concerts. For his 18th birthday Steve arranged for us to go to NYC to see the Laurie Berkner band. She invited him to a private room to meet the band afterward. It was a highlight of all of our lives. He met Andy Grammar with tickets compliments of the UVA Football Team. One of his favorite songs of all times was “Honey I’m Good.”
In 2011 Wesley’s father died by suicide. My mother left her life in Northern Virginia and moved in to help me. She cared for Wesley and for many years was my partner in raising the boys. She still is. She meticulously prepared his special diet and slept with him every night. She would roll him into breweries on Saturday nights. It was a sight to see. Inevitably, until last Tuesday, each and every night he ended up sleeping on her shoulder. They could not have been any closer.
Almost 7 years ago God brought Steve into Wesley’s life. I knew Steve was the one by Wesley’s reaction the very first time he saw him at the Trampoline park. Wesley screamed with excitement and reached for a hug. He was the best judge of character. He could not be manipulated or fooled. He saw the essence of who you are. I always knew if he loved someone especially, they were special.
Their bond was deep and strong. Their silliness filled the house with screams of excitement and breathtaking laughter. I knew it would take a special man to enter our world and God sent us the best of them.
My aunt Dolly moved in with us a year and a half ago. Wes always loved a house full and she was the only person who would sit for hours and hold his ipad. It could easily be on the table but Wesley loved when someone just sat with him. And she did.
Wesley was loved by his brothers and sisters, Some by birth, some by blood, some by marriage, and some by love. It breaks my heart that Emerson, Nathan, Leah, Aaron, Chrissy and Audrey, baby Chloe, Stevie, and Elayna carry the grief of losing a sibling especially one as special as Wesley. He impacted them and they are changed for having known his love.
Wesley entered UVA hospital on February 17th. At first it was thought to be manageable on a general medicine unit but that quickly changed as the gravity of the illness expressed itself. He fought so hard in the medical ICU with the best doctors and nurses. I knew he was in the right place. That exact unit saved his life 3 and a half years ago. Their care and compassion to my family will stay with us and for that, I am exceedingly grateful. I am at peace knowing it was, as simple and as complex it is to say, his time to go home.
Wesley made our family’s life unique. He allowed us to live in the world of special needs. It was a club I never knew I wanted to be part of but was so proud to be a member. Our fellow citizens are resilient and inspirational. There is an unmatched comradery among people here and you never feel alone. I have met parents who paved the and given me a road map of grieving the most significant loss possible. I have watched them come through the other side and live life again. It gives me hope that we will do the same with the help of our loving God.
Every single night I would kiss Wesley goodnight and tell him he is my world. He smiled every time because he knew that was the truth. My world is shattered yet my faith is strong and I know God will give us the strength, peace, and endurance we need for this unimaginable journey. He already has begun.
As a mother who gave birth to one of humanity’s most extraordinary human beings, I knew I would bury my son. It doesn’t make it easier. It doesn’t make it peaceful. It is raw. It is cruel.
I always knew our time was borrowed. In Christianity we hear words like “our children are on loan from God. They are His.” I think most parents who share our faith understand it is as a concept of spiritual trust but never actually live in that space. It was our reality. From the moment he was born I knew I wouldn’t keep him. I knew in the depths of my heart I would be standing here today. I would gladly bear the pain of losing him 1,000 times over than have him know the pain of losing me. God’s mercy needs untangling sometimes and it isn’t pretty to us, but it is there.
My faith has sustained me since childhood. I buried Wesley’s father 15 years ago. When I spoke at his eulogy I shared the two words I clung to. I find myself in another cruel February clinging to them once again.
But God…
Wesley is gone BUT God generously gave us 24 years… My heart is broken BUT God has given Wesley a new heart, one that can not be infected or fail him… We are devastated BUT God has promised blessed are those who mourn for they will be comforted. And He keeps every promise forever. I don’t know who I am if not Wesley’s mom and caregiver BUT God will give purpose to this pain My children mourn the loss of their brother BUT God has surrounded them with love and friends and one another… I will never feel Wesley’s whole soul hug during this lifetime again BUT God had Wesley give me so many during his 24 to last the rest of mine…
God is good when He says “yes”. God is good when He says “no”. One of my frustrations as a Christian is when everyone declares His goodness because He answered the prayer in the way they wanted. They proclaim it when they see a miracle, the miracle as they thought it should be. A loved one is healed – God is good. A soul is saved – God is good. Catastrophe averted – God is good.
Our son died.
I tell you now…God is good. We still got miracles. They aren’t the ones we wanted but they are here and they are coming. There will be ripples of miracles I will never know. I am honored for the miracle of 24 years with Wesley when I didn’t know if I would get 24 hours, 24 days or 24 months. God didn’t take Wesley too soon according to His timeline. For this mother’s heart it absolutely feels too soon but also feels generous and merciful.
When Wes was a baby we would play a game. I would hold his arms and say, “Oh my where should I?” then I would pause. He would giggle with anticipation. After a few seconds I would exclaim, “tickle!” and tickle him somewhere with my chin. It was one of his favorite games. He waited with joyful anticipation because he knew the hands that held him. He knew they were loving and kind and only wanted to best for him. The empty space wasn’t frightening. It didn’t cause him anxiety. It made him joyful knowing something good was about to happen.
I sit in the stillness of a once beautifully chaotic life. The anticipation is there. Is it joyful? Only because I choose it to be. I choose joy. I know whose hands hold me. I know He is good. I know He is loving and kind and merciful, and generous. I know He will somehow, someway create good. If He could create the ultimate good from the death of His own son, He can and He will with mine.
We had 24 years of bright, unfiltered joy. It wasn’t small. And it is not unfinished. God did not silence that laughter, He opened the room. Now Wesley’s laughter is shared with the angels and saints in the presence of his grandfather and father and our Good, Good Father. His laughter is now joined in the songs of worship around the throne. He stands tall with no balance or strength issues. There are no wheelchairs in heaven. There are no doctor appointments or bad news. There are no challenges to overcome in heaven. Just love. Just unfiltered, untarnished, inexhaustible, exuberant, lavish love. Wesley was, no doubt, right at home there because that is how he loved us here.
I close with a verse, a hope, and an assurance. 2 Timothy 4:7-8
I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day.
Our boy did fight the good fight. His race was harder than most and he never complained. He never felt sorry for himself. He carried what was given to him and just loved. I know his crown is spectacular. It is well earned. I will always remember the grace with which he carried his challenges and lavishly loved not in spite, but because of them.
I always said we spent so much time trying to make Wesley more like us when, really, we should be more like him. I urge you all to be more like him. Laugh loud Love hard Hug Tight Dance Silly Leave the room better than when you came not because you were loved, but because you loved. And do it with all you have for as long as you have. Just like our sweet, sweet boy. In that his story in us is yet unfinished.
I confess. I lost myself for a while. When someone would ask how I was I would begin speaking about how the boys were or my mom or my husband. I have one friend who would always stop me and ask, “but how are YOU?” I never really knew how to answer that question. I didn’t know how I was. I didn’t know who I was. I lost her somewhere along the way during the last three years.
I have been a caretaker in some way for the last 26 years. It intensified 23 years ago when our son with significant special needs was born. It then intensified dramatically 3 years ago when he became very ill and spent a month in the intensive care unit. During that month we were told three times he was not going to make it. Thankfully, he and God had a different plan but we emerged with new medical needs. There are now medications throughout the day, intermittent catheterizations, diaper and dressing changes, doctor’s appointments and documentation. Our son is cognitively 3 in the body of a 23-year-old man with all the perils and potential hazards to be considered when caring for a toddler.
Being the caretaker of another human is a divine calling. It is a gift and one for which I fervently prayed, begging God to just let our son stay and to allow me to continue to care for him. Yet the awesome responsibility of another life and their literal ability to stay alive is brutal. It is exhausting. It demands all of you and then a little more. Getting lost is easy.
It is a different life and very difficult to offer glimpses to those who do not live in my world. So much of my time is devoted to tending care that it is far too easy to forget who I am outside of those duties. Without intentionally taking space for myself, I can get lost easily and without even realizing it because all I can do is what is necessary to get through each day. To me, a luxury is a shower or to eat an entire meal without getting up. Self-care is not going to the spa or a winery or attending a concert. In my life self-care is basic hygiene and some days I do not even accomplish that.
It is quite the conundrum. Some days it is an impossibility. I so intensely care for another there are days it is simply impossible to care for myself or others I am blessed to love. Relationships can be difficult to attend to in the way they demand or deserve. We sacrifice people and plans we don’t want to forego yet my purpose demands it.
In my experience, most of the time, life will gut you to get you to remember who you are. It will strip you down. It will seemingly mercilessly distill you to the basic element of who you are.
When I was in college, I had an organic chemistry professor who could not get across to the class the importance of distillation before we began the experiments. It was a night class and most of us had full time jobs. To us it took too much time to do the extra steps. We were already tired from the day. No one wanted to be there a moment longer. It didn’t matter much for the integrity of the course we needed to make sure what we were using was the purest substance and how it was intended to be.
Distillation is an imperative step used “primarily to separate substances from the mixture to allow for purification or the concentration of a desired component.” It will rid the solution of any potential compounds not necessary for the goal to be achieved. One night our professor intentionally contaminated our solutions so if we did not go through the distillation process, we would conclude the incorrect answer. Every single person in my class that night got the lab wrong. To each of us he simply said, “It must have been contaminated.”
The distillation process takes heat. It takes time to get to the boiling point and to get rid of what does not belong. It takes patience and waiting during the process. But once all of those unnecessary contaminants are gone, the element we are testing is reliable. It is true. It is pure.
I sit on my couch on a sweltering hot day. The temperature outside is frigid compared to what it feels like in my soul. This was not a voluntary distillation. Life does what life does. Boiling points have been reached. That which does not matter melts away and I am left with inspecting the elements that are left in their purest form.
I remind myself the distillation process does not obliterate. It gets rid of the residue. It tests other components. It allows you to separate and discard. It voids contaminants. It is re-birth.
The distillation process rids me of beliefs about who I am which I have picked up along the way. Some of them were true yet I want, I choose, to leave behind in the residue. Some were never supposed to be part of the compound. They were not mine to hold and could only harm me.
I look in my flask. I see what is left. It is all those things no one can take from me and I only lose when I give them up.
The process also rids me of names thrust upon me by others and by myself. They are contaminating lies. And so, I cling desperately not to who others say I am or even who I say I am. In my flask all that is there now is who He says I am.
I stand up off the couch. I take a deep breath. Gratitude fills my being. Distillation is a gift. It is in the letting go we are left with all we ever actually needed. My list and your list are the same. Our truths are endowed by our Creator as we were stitched in our mothers’ wombs and they are irrevocable. No amount of loss, heart ache, trauma, worry, anxiety, or difficulty changes what you and what I will find at the end of our distillation process.
Because at the end of our prayers regardless of whether God has said “yes” or “no” is new life, a new opportunity to begin again building upon the blocks of what is mine and who He says I am. That is a pretty good place to start, I’d say. And so I do. One step ever onward.
